Whole-lung Radiation

Sorry for the delayed update! It took us some time to decide what (if anything!) to do next.

Ultimately, we've decided to pursue a course of whole-lung radiation therapy. It is - as the name implies - radiation treatment to my entire lungs. Most commonly, this is done in pediatric tumors such as Ewing's sarcoma and Wilm's tumor. To be frank, there is no specific data to support the use of this treatment for my tumor. But, then again, as no one is entirely sure what my tumor is, that's not at all surprising! We spoke with radiation oncologists at several centers who agree that this is a reasonable treatment to pursue.

Because we're treating such a large area, the total radiation dose is quite low (I'll only receive twelve daily treatments - compared with thirty when my lymph nodes were treated last winter). Also, the amount of radiation received each day is slightly lower than normal. So, I should have few/no side effects during treatment. Most likely, I'll have no chronic side effects either (although there is a risk of reduced lung function).

We had some good imaging results this week. A CT scan on Friday showed that my lungs were remarkably clear. I have only one, 1 cm lung nodule (that's been stable for a few months). The rest of my lungs were clear (no nodules, 'infiltrates', etc.). While this doesn't rule out disease that we can't see (that's why we're pursuing more radiation...), it certainly is a very good result. In addition, no disease was visible elsewhere in my abdomen or pelvis. The CT did confirm that my spleen is - in fact - gone (it's nice to have an honest surgeon). Last of all, to exclude other systemic disease before I start lung radiation, I had a screening brain MRI that was termed 'unremarkable' (I tried not to take offense at this).

So, I'll start my radiation today, we'll finish in a couple of weeks, then we're off for vacation! As always, thank you for your prayers and support,

Robert and Gwyneth

Spleen Pathology

The pathology report from my spleen came back yesterday. Overall, it was pretty good news.

Since starting chemotherapy, I had several new, 1-2 cm nodules appear on CT-imaging of my spleen. These nodules turned out to be clotted blood (technically, "organized hemorrhage"). Also, with the help of some special staining techniques, the pathologists were also able to see some small clusters of tumor cells (these were microscopic) within the spleen.

So - bottom line - there was tumor in my spleen, but not very much of it. The "big" nodules that were seen on imaging were actually caused by bleeding.

Why did I have bleeding in my spleen? Presumably, the bleeding was caused by the small tumor deposits. This may be similar to what happened in my lungs this February: CT showed small nodules of tumor surrounded by larger areas of bleeding. This just seems to be a characteristic of my tumor.

So, this doesn't change the plan much. What is the plan? Still working that out. We should know in a week or two.

We're very happy to report that I'm feeling great! My belly is only a little sore now (no, I'm not doing sit-ups yet, but then again, I haven't done those in a while!) and I'm getting around almost like normal. I went to work for a few hours on the last couple of days, but still keeping a reduced schedule so I can get some extra rest.

It's a beautiful evening - Gwyneth and I are (finally!) going out for crabs. We had intended to do this on June 20, but I ended up in the Emergency Room instead! We'll have better luck this time.

Thanks for your support and prayers,

Robert and Gwyneth

Recovering well at home

We've been home for about 2 days now (since Sunday afternoon) and I've continued to steadily improve following my splenectomy last Thursday.

I'm genuinely feeling hungry now (vs. eating because I'm supposed to!), my digestive system is back in action (not otherwise specified...), and I'm able to move around much more easily and with a lot less pain (I'm still taking ibuprofen and a little oxycodone). I'm happy not to have any drains or tubes left in place. In fact, I don't even have a bandage over my abdominal incision - it's intended to be left open to the air. Hard to believe that just five days after all of that surgery, I only have to wear a single, regular Band-Aid (covering my drain site incision)!

Gwyneth and Joan have been taking good care of me (and William!) over the last couple of days. But, I'm on my own today and have been able to shower, make breakfast, get up and down the stairs, and pick up around the house without a problem.

Thank you, as always, for your support and prayers!

Robert and Gwyneth

Continuing to feel better

Happy 4th of July! We have a terrific view of the Baltimore harbor from my hospital room - should be great for fireworks this evening.

Gwyneth and I both slept pretty well last night (of course, someone walks in, turns on the lights, sticks me with a needle, takes my vital signs, etc. every hour and a half, all night long). I'm continuing to feel better today. I had some soft but solid food this morning (oatmeal, a banana, yogurt, and coffee) which seems to have gone down well, we walked around the unit two times, and I've been sitting in a chair for most of the morning. It's really getting much easier to move about.

William and Joan came for a visit. As usual, William was full of energy and not phased at all by the 'strange' environment here (photo taken while he was running laps around my chair):

I've been unhooked from my IV pole, so all I have left is my surgical drain, which isn't too bothersome (I had a similar drain in place for 6 weeks after surgery last fall). This one should come out before I go home. Thanks again for everything!

Robert and Gwyneth

Splenectomy went well

We're happy to report that yesterday's operation went very well!

The procedure was at 2:30 in the afternoon and took about two and a half hours. But, between anesthesia preparation, recovery, etc., I was away for five hours total. Naturally, I was asleep for most of this, but poor Gwyneth had to sit around for all that time!! Gwyneth's friend Rosemary Duvinage and her mother Joan helped to keep her company in the waiting room.

After surgery, I woke up with quite a bit of abdominal pain. Fortunately, the recovery room nursing team was very agressive and provided lots of pain medication, so I was much more comfortable within an hour or two. We were able to go up to my hospital room at about 8:30 PM.

As usual, I had several extra tubes coming out of me after surgery. One IV (for pain medication and fluids), one tube going through my nose and into my stomach (a nasogastric tube), one tube in my bladder, and one tube to drain fluid from the surgical bed (coming out through the skin). As you might expect, it's a little hard to move around with all of these hooked up to bags, pumps, suction, etc.! We were able to remove the nasogastric tube and bladder catheter early Friday morning (and I'm much more comfortable for it!!).

My incision runs from the bottom of my sternum (breast bone) to my belly button - about eight inches long. The dressing is still on, so I haven't actually seen the incision, but I'm told that they did a very nice job sewing me up.

Today, I'm only eating ice chips and taking sips of water. After abdominal surgery, your digestive tract generally shuts down for a while, so you have to slowly get it restarted. I'll have liquids tomorrow (Saturday), and solid food on Sunday. Hopefully, we'll be able to go home on Sunday, but we certainly should be out by Monday.

Thank you again for your support and prayers!

Robert and Gwyneth